Telephone and in-person disclosure of genetic test results: 6-week recall, comprehension, and distress among participants in the REVEAL Study

Background: Given limitations in healthcare providers' abilities to see patients in clinic, alternative mechanisms are needed for disclosing genetic test information. The REVEAL Study is an NIH-funded, multi-center clinical trial examining the impact of APOE genetic testing for Alzheimer's disease (AD) risk. The third round of the study compared telephone disclosure against in-person disclosure on measures of information recall, comprehension and post-test distress.

Methods: 257 participants were randomized to be disclosed AD risk information from a genetic counselor either via telephone or in person. Estimates were based on APOE genotype, family history, ethnicity and gender (risk range: 6%-70%; mean: 29%). Six weeks after disclosure, recall and comprehension of information provided during disclosure were measured. Test-specific distress was also measured using the Impact of Events Scale (IES).

Results: Most participants correctly recalled whether they carried an AD risk-increasing allele (82%) and their genotype (73%); and understood which allele increased risk for AD (69%). Most participants (86%) also recalled their lifetime risk estimates within 5 points. IES scores averaged well below clinical cutoffs for concern (mean: 2.5). Neither chi-square analyses of recall and understanding nor multiple regression analysis of distress scores showed differences between the telephone and in-person disclosure arms.

Conclusions: Telephone disclosure was as effective and safe as in-person disclosure on 6-week measures of recall, comprehension and distress. Further analyses are underway to assess the impact of telephone disclosure on provider burden, patient satisfaction, and behavioral responses.